Tiara had her swallow test yesterday and just as I expected she failed! I knew she was aspirating but I wasn’t sure to what extent. Apparently the moment she took a sip of the barium with a straw they watched it pass over into her lungs. Clear cut aspiration. She coughed but it was delayed, 2-3 seconds after she swallowed, not good enough to protect her lungs from foreign substances.
The test ended very quickly , I don’t think it even took 10 minutes. The speech therapist looked over at me and said “ she can’t drink or eat anything that isn’t thicker than milk, nectar consistency. You are going to have to thicken anything she drinks with Simply Thick (nectar). At this point I was super grateful she said Tiara could eat solids because I knew going in worse case scenario was her getting a g-tube and not being allowed to eat food in the future.
I already knew she was going to give me bad news so I was some what prepared but all I could imagine was TT and I at Target adding some stuff to her diet coke before I could let her drink it. Once she gets her strength back and is able to move around the house freely how am I going to keep her from chugging a bottle of sparkling water? What if she grabs my water glass I always keep laying around the house? What about the bottles I keep in the car? The what if scenarios keep swirling in my head.
Of course the speech therapist made it sound like it wasn’t that big of a deal and I would just have to creative with the whole idea. Oh
I forgot, I am supposed to have her drink in a thinner diameter straw to slow down her drinking also. She suggested getting those fun curly straws from the party store, the ones that are impossible to clean and don’t fit in any utensil drawer and I always throw out when the kids aren’t looking. Yes, those ones. I hate those straws!
Hmmmm, I guess it should be easy, you all saw the video of her shoving food and soda in her mouth. This is me being facetious.
Yes, I know thickening everything is a million times better than spending her life in the hospital in a state of chronic respiratory distress, but it just feels like yet another job to complicate our lives. Unfortunately the past few months feel like the beginning of a new phase in Tiara’s health which isn’t going to improve anytime soon.
Looks like we are going home today, most likely. My master bedroom now has an oxygen concentrator and 7 other assorted tanks in various sizes, a pulse oxometer and a suction machine waiting for us. A total sanctuary just like they talk about in all the home design magazines.
Future prediction as to where I see this going? Option 1:Tiara refusing to drink the thick liquids and ending up dehydrated in the ER within days. Option 2: Me giving in to her pleading for ice her favorite thing to which she is no longer allowed and her getting another pneumonia right away. Farther down the road….. Tiara with a g-tube once again, hooked up to feeding during sleep to prevent chronic dehydration.
Sorry for the negative thoughts, but even I have a breaking point and I may e about to splinter.